Here's my question - I don't have a lot of the skin issues but it seems like the sun may be a trigger for joint pain - it seems that right after an hour or so in the sun my hand and feet ach more profoundly

Is there a link here?

also, I spent most of last weekend in the yard, hence in the sun Then Monday had this terrible eye problem - very dry eyes which turns out to be sjogrens, but while I had 'dry eyes' before come Monday I could barely open my eyes and they hurt to work on the computer, etc - very dramatic worsening on Monday -

do you think it was caused by the sun on the weekend?

Does anyone else experiance a flare trigger from the sun of non-dermalogic symptoms?

rob

09-04-2009, 09:47 AM

I get very sick if I allow myself about 30 minutes of sun exposure. My joints will hurt within a few hours, and within an hour, I will have symptoms that resemble the flu. Fever around 100, chills, mild nausea, and fatigue that is really bad. Sometimes it lasts a day, sometimes two. For all the unpredictability of SLE, a flare up caused by the sun happens without fail for me.

As far as eye problems, I had some problems last winter that caused me to see things in shades of red/pink. It happened after being outside on a sunny day after a snowstorm. I would go back inside after having been out for an hour or so, and the world had a pinkish tint to it for a few hours. I also get dry eyes pretty often, but I don't have Sjogrens. I got a set of special prescription sunglasses through my opto/opthamologist, and they really help in all bright environments. They never came up with a name for the altered vision, and it was not "snowblindness".

Like Ron and luvpinkpeeps, I get very sick when I go out in the sun. I can only spend very short periods of time and sometimes the sun is so intense and hot here in the desert that just running errands can expose me to the sum more than my little body can handle. I will get flu like symptoms, exactly like Rob. My doctor always tells me to avoid the sun at all costs and I try very hard to do what she says :veryhappy: I will wear a hat when I am out and even wear long sleeves if I can stand it. The sun is just so yucky for us and can cause so many problems from skin issues to joint issues. I think your pain is related to the sun. Just relax your body for a few days, make sure you get plenty of sleep, drink lots of water and you will feel better soon. Hang in there and just think, at least you are figuring this out and it is something that can mostly be avoided :hug:

karenboss

09-05-2009, 06:18 AM

Well dang. That explains a lot, but it is such a major life style adjustment that I am really bummed out.

I like to camp and hike, ski - all those fairs and festivals.

(sigh)

Danica01

09-05-2009, 11:19 PM

I love to camp and hike too! The good news for you is that I still do them. I just make a few adjustments before I go. I will wear my hat and I try to go when the sun is going down and cooling off a bit. We camp all the time and we try to make a camp spot around a tree I can sit under and stay out of the sun. You can still do all the things you love and you will figure out the changes you need to make in order to make all these things work for you :veryhappy:

karenboss

09-06-2009, 09:31 AM

Thank you Danica - you're right, it 's just an adjustment. Does sun block help too?

kinda hard not to get bummed out - but no sense in it either.

Karenlee

09-06-2009, 04:24 PM

All of you are the greatest-this site is a wealth of info, more than I'd gather from my doctors. I came on today to see about the fatigue-I suffer with this as much as the pain. The R-dr. told me to stay out of the sun-not why. I thought it was because it would trigger the skin rash. Now I see the reason why my joints ache so badly, fatigues, nausea sets in--THE SUN. I am a gardener, just to keep active, live in So. Cal.--answer is so clear now. Thanks again guys--you rule!!:yes::yes:

karenboss

09-07-2009, 05:50 AM

Ditto what KarenLee says - I wound't have connected the joint pain to sun exposure, but now that I think about it it is quite obvious since symptoms usually flare right away.

thanks for sharing your experiences.

Karenlee

09-07-2009, 08:27 AM

Can anyone answer this question? Why does the sun affect joint pain, fatigue, nausea etc. in people with SLE? I can understand the disoid connection, but why the systemic? Does the sun produce more white cells, use up necessary vitamins? Just don't understand. Thanks guys.:embarrassed:

karenboss

09-10-2009, 07:41 AM

Here's one explaination that I found, but there doesn't seem to be much written about it, and it is definantly a factor in joint pain

Ultraviolet A and Ultraviolet B can actually damage DNA near the surface of the skin, altering the DNA and causing the formation of antibodies, thus, creating a lupus flare. Some individuals with lupus report rash, fatigue and aching upon exposure to the sun.

http://www.lupiebin.com/faqs.htm#sun

Karenlee

09-10-2009, 08:21 AM

Thank you Karenboss-first answer I have gotten that explains the connection for me. Thank you too for the web site--never saw it until today, printed the entire thing. KarenLee